First apppointment with Paed - what will happen at the appointment and after?

[blm]

My son finally has his initial appointment through to see a paed after me pestering the GP for years! They finally agreed due to his uncle being diagnosed with Tourettes (although I am convinced his uncle has ASD rather than Tourettes but he had a very quick referral/diagnosis - literally weeks). Anyway, they have finally listened and we see them in a few weeks.

 

I have heard soooo many stories of the process of diagnosis taking a very long time but I just wondered if someone could give me a brief overview of what to expect at this meeting and the process thereafter. I am in South West area (if that helps).

 

I have also been told that they try to find another reason for behaviours if there is a more obvious one and am slightly worried they will try their best to go down the Tourettes route rather than looking at him and his behaviour as an individual person. Has anyone else experienced this?

 

This is all completely new and I want to make sure I am prepared (so I can prepare my son) and I don't want to ruin things having fought so hard to get this far (although I am aware that this is only the beginning of the fight).

 

Thank you

[trekster]

I got diagnosed at age 16 from Tyndals Park Children's centre in Bristol. i was very impressed with the way they assessed me. We told at the time that it was definitely Asperger syndrome although looking back if my gran had known about my delayed speech then i could have got an Autistic disorder diagnosis instead.

 

Both yourself and your son will be asked questions. They will probably ask questions about his childhood and how he plays with other kids. It would be a good idea to let the doctor know what problems you may be having at school.

 

They will probably assess for other PDDs including ADHD but im unsure if they will test for tourettes. You could ask the doctor what they think your son has and then mention the suspected misdiagnosis if they think it's tourettes. They will probably assess for non verbal learning disorder as well.

 

HTH

 

Good luck.

 

It took about 3 months before the final report of what the diagnosis was to come through.

[Sally44]

Although I had had concerns raised about my son when he was 3, these were not followed up by the GP.

 

So my son started a mainsteam primary. After 4 months the SENCO was asked to observe him and he wrote a report.

 

I was called into school and told that they wanted to refer him to the Speech and Language Therapist. I agreed.

 

It took about 4 months for her to see him in school. She arranged a further assessment/meeting at our house, which was about a month later. She told me then that his speech and language and social communication difficulties were consistent with a diagnosis of an ASD. She said she wanted to refer him onto the childrens hospital communication clinic. She also asked the school to refer him to the Educational Psychologist.

 

It took 6 months for an appointment to come from the Developmental Paediatrician and the Clinical Psychologist. Both saw him twice over a period of 12 months. The Paediatrician even went into his school to observe him there.

 

From start to finish ie. getting a diagnosis, was 18 months.

 

His diagnosis also stated that he had significant sensory issues, as well as significant speech and language difficulties.

 

I found it much harder to get any further difficulties identified, and he does have further difficulties. He was finally, over years, diagnosed with a sensory processing disorder, dyspraxia, auditory processing disorder, dyslexia etc.

 

Although, ideally, you should not need to get a diagnosis of each and every difficulty, the fact is that support or provision is ONLY provided when there is evidence of need. Some LA refuse to diagnose dyslexia [which is illegal], but they still do that, until you are forced to go to an educational Tribunal where they do recognise each and every need, and they do recognise independent reports.

 

So, potentially you are looking at around 18 months.

 

If you think he has ASD and tourettes, then say so. The criteria for tourettes does not include speech and language and social communication/interation and emotional literacy difficulties. Those types of difficulties fall under an ASD.

 

If you think he has other difficulties, then bring them up too eg. sensory issues, a specific learning difficulty such as dyslexia, poor working or short term memory, poor co-ordination and self help skills.

 

My son has recently received addtional diagnosis of an Anxiety Disorder and OCD. So things can develop over time. If he does have an ASD he will already have a high level of anxiety. Tourettes makes him more complex, and it could make him more likely to have other difficulties.

 

Keep a diary of things that happen, or things he says or does, so that you can bring up examples when you have the appointment.

 

 

[bed32]

The route for our son was GP to Paediatrician, Paediatrician to CAMHS initial assessment and initial assessment to consultant (clinical psychiatrist) about 18 months in all (the longest individual wait being for the initial CAMHS appointment).

 

The first few are very frustrating - they are really acting as gatekeepers and in each case the important part of the meeting was only a few minutes long - enough for them to see that he has problems and that he needs to progress to the next stage.

[tomisms]

I think it varies according to your local area tbh. I first took my son to the GP when he was 5 (I thought he had Tourette's syndrome), was referred to a community paediatrician, who told us there and then that he thought my son had an autistic spectrum disorder. The initial consultation was out of our area, so we were referred to a different paed, who saw him every 6 months and eventually arranged for him to see a SALT. Then we waited and waited for other appts to come through, saw OT for his sensory issues, had a social skills course from SALT, we are still waiting for an urgent referral to CAMHS from about 18 months ago (I've given up on that one!) and have recently been seeing a clinical psychologist. His CP is absolutely certain that he has Asperger's, and we are currently looking for a formal diagnosis. So all in all, we started the process over 3 years ago, and are still waiting.

[blm]

Thank you very much for your replies - that's really really helpful.

 

I have just had an appointment through for Speach and Language Assessment a few weeks after his appt with the Paed so I'm hopeful things might not take as long as anticipated - I have been told about 3 years by another parent (and they have rejected that he has anything wrong with him in the end). He has lots of issues: tics, sensory, short-term memory, explanation of things problems, issues understanding feelings, obsessions, anxiety issues, routine issues. I have listed everything and when things change or happen, I have kept a diary so I will ensure I take that with me as there are so many things, I can forget!

 

To be honest, I am not worried about having him 'labelled' (as some people might say), I just want to help my son do the things other boys of his age are able to do without the problems he experiences (and we as a family then have to deal with). If life is stressful at 6, how will he ever cope with exams, being dumped by girlfriends, jobs, mortgage etc etc.

 

Thank you once again for your help

[trekster]

If your the parent of the undiagnosed kid is online you could try directing them here. It took 18months of pestering our GP to get me referred. Excellent idea to have a diary to take with you, i took a sublux diary with me when i tried to convince my 1nd physio that i have EDS/HMS. It worked :-)

 

i totally understand you wishing to get help for your son. NAS has a great expectations campaign at the moment to try and improve things for younger people might not apply to your son yet but could influence his future.

 

Good luck on getting your diagnosis.